As of June 30, 2017, Health Canada approved the first-ever drug for treatment of spinal muscular atrophy (SMA), which is called Spinraza.
This is amazing news. However, this wonderful drug that’s meant for patients living with a horrible condition is completely unaffordable.
In previous articles, I explained the condition that I live with: SMA. It’s a progressive neuromuscular condition that causes major problems with walking, muscle strength, motor skills, breathing, swallowing and more.
There are four types of SMA with varying levels of severity. Depending on what type you have, SMA can be terminal and can shorten life expectancy and will definitely cause a profound and limiting disability.
Currently, Spinraza is funded in Manitoba for those with Type 1 SMA who are diagnosed before seven months of age. It’s funded in Canada for children with SMA Type 2, as long as they are under 12 years old, which leaves all others unable to qualify for treatment coverage. Spinraza is funded in other countries, primarily the United States, for all types of SMA with few restrictions.
Spinraza is administered as an injection, through a procedure similar to an epidural. It’s injected into the spinal fluid and needs to be given at four specific intervals over a span of two months, and then it’s given every four months after that for maintenance.
SMA is fairly common for a rare disorder, affecting approximately 1 in 6,000 people. However, if the patient or patient’s family want treatment and access to a drug that has proven to improve a person’s quality of life and, in some cases, restore some abilities, it will cost $750,000 the first year and $375,000 every following year.
For this price, Spinraza may help patients improve their arm and leg strength, ability to swallow and overall endurance. Some children who are treated as soon as they’re diagnosed, typically under one year old, are actually walking.
The funding gap means many SMA patients will still decline in health and have to endure the progressive symptoms of this condition.
There are many petitions – including one on change.org – that people can sign to help fight these ridiculous restrictions and advocate for the cost to be covered. Any condition that has a treatment should be available universally, and no patient should have to sit by and endure a condition that can be treated.
Crystal Rondeau is a rock music and tattoo-loving young woman who lives with a physical disability and chronic illness. Her main goal in life is to break barriers and destroy the stigmas that come with being disabled and ill. She does this by speaking in schools, volunteering and being very open and uncensored about her life.
Published in Volume 73, Number 23 of The Uniter (March 28, 2019)